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Sunday, 28 February 2016

Rare Disease Day: Heather and Mesothelioma

Today I'm also profiling someone else with a rare disease. After this you won't know about every rare disease but you'll know about at least three. (Maybe read Part 1 and 2 of this 'series' first). I first found out about 'Rare Disease Day' through Cameron whose wife was diagnosed with mesothelioma in 2005.

Mesothelioma is a rare cancer that occurs in mesothelioma of the body (the thin layer of cells lining the body's internal organs). Around 80% of the cases can be attributed to asbestos with about 3000 people in the USA are diagnosed with mesothelioma a year. Even though asbestos is banned in many countries, somehow it's not banned in the US or Canada (I thought it was, because it should be) because we know it causes cancer. And not in the way that 'eating bacon may cause cancer' (don't feel bad about eating bacon). Part of the problem around diagnosis is that the cancer can be dormant for 20-40 years after exposure to asbestos. Those diagnosed with mesothelioma have a poor prognosis overall with most people having a life expectancy upon diagnosis of 1-2 years. However, the more research and treatments into this rare cancer, the better the survival rates become.

"A cancer diagnosis throws you into an unknown world. In this world,
emotions roll over you like big ocean waves. What the future holds, the
future you thought you had so carefully planned out, all of a sudden
changes with 3 words: “You have Cancer.”
People are quick to give advice, or tell you how they know a
person who knows a person who died from your kind of cancer. They mean
well, but don’t quite know what to say because suddenly, looking at you
and seeing themselves, they are faced with their own mortality. The
feeling of loss is hard to explain, but it’s perhaps one of our most
universal experiences as humans.

Without treatment, I wouldn’t live past 15 months. In November of 2005
my doctor said I had malignant pleural mesothelioma. He said “cancer,”
but all I heard was that I might not be able to raise my three month old
daughter, and my husband might become a widower after just six and a
half years of marriage. I learned that my father, a man who worked in
drywall construction, had unknowingly exposed his own little girl to
asbestos through his work jacket. Treatment options were limited and
there was no guarantee. Today, I’ve outlived my original prognosis and
continue to raise awareness of this terrible disease."